LEGISLATION

Congress must give patients the power to decide who can see, share and sell our most sensitive information on earth, our health records.

Americans deserve both progress AND privacy. We need a full public debate and roll call vote on any Health IT legislation.
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2007-2008 Legislation

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(Looking for Legislation proposed in 2005? Click here.)

  • Health-e Information Technology Act of 2008, H.R. 6898

Sponsor: Rep. Stark (D-CA)

H.R. 6898, the Health-e Information Technology Act promotes the adoption of health IT and includes some privacy provisions. Patient Privacy Rights will post analysis and recommendations as soon as possible. The bill will be considered in the House Ways & Means Committee.

View a summary, a section-by-section analysis, and the Privacy & Security Provisions of the Health-e Information Technology Act of 2008, H.R. 6898.

Sponsors: Rep. Dingell (D-MI-15) Rep. Barton (R-TX-6) with 11 Co-Sponsors

The Protecting Records, Optimizing Treatment, and Easing Communication through Healthcare Technology Act of 2008 establishes an Office of the National Coordinator for Health Information, requires federal agencies using HIT to comply with the HIT standards of the bill, and provides incentives to private entities to adopt qualified HIT by using the federal spending power to issue grants and loans.

The PRO(TECH)T Act does address some privacy concerns, and provides improved breach notification, but does not go far enough. Critical missing protections include, but are not limited to, a clear requirement that Health IT be built to allow segmentation of sensitive information and a clear requirement that no health entity, be it a provider, insurer, employer or other, be allowed to use private health data under “health care operations” without consent. The PRO(TECH)T Act should also include a definition of privacy. Patient Privacy Rights is working closely with sponsors of the bill to ensure it truly does PROTECT Americans’ private health records. The Top Line Changes from the previous draft of PRO(TECH)T can be found here.

The House Energy and Commerce Committee first drafted this Health IT bill as “HITEC“, and held a hearing on the draft June 4th, 2008. Patient Privacy Rights was invited to testify at the hearing. Dr. Deborah Peel provided oral remarks at the hearing as well as a written testimony urging a definition of privacy and restoring patient control of their personal health information. Learn more

Status: There was a full Energy & Commerce Committee markup on July 23, 2008. Read the latest version of the PRO(TECH)T Act, as reported by this committee, here.

Sponsor: Sen. Kerry (D-MA) with 18 Co-Sponsors

The Medicare Electronic Medication and Safety Protection (E-MEDS) Act would mandate e-prescribing for all Medicare Part D beneficiaries. While we agree that e-prescribing is attractive, we also know that Americans do not want their private prescription information data mined and used without their permission. Our current system already facilitates the daily data mining and sale of every prescription from every one of the 51,000 pharmacies in the U.S. This has been the reality for over a decade. You cannot get a prescription anywhere in the U.S. and keep it private or stop your data from being sold. Even paying cash out-of-pocket will not stop the sale of your prescriptions.

Mandating e-prescribing without privacy provisions in effect endorses and encourages the current practices and sets Americans up for even greater violations of their private health records down the road. The E-MEDS bill offers a golden opportunity to ensure both progress and privacy. The Coalition for Patient Privacy sent a letter to Congress recommending the inclusion of our privacy principles.

Status: Read twice and referred to the Committee on Finance 12/5/2007.

Sponsor: Rep. Schwartz (D-PA) with 38 Co-Sponsors

This is the House version of E-Meds S. 2408.

Status: Referred to the Subcommittee on Health 12/5/2007.

Sponsor: Sen. Snowe (R-ME) with 45 Co-Sponsors

The Genetic Information Non-Discrimination Act (GINA), S. 358, passed the Senate and is a good step in the right direction. We are concerned about the ability to enforce this bill, however. While GINA forbids employers and insurers to use genetic information to discriminate, it still allows them to see and hold genetic records. Patients have to just trust their employers and insurers. Without audit trails of access to genetic tests, there is no way to tell if the tests have been used to discriminate.

How will you know if your genetic tests were considered when you don’t get a job offer or promotion or when your health insurance premiums are raised or your health insurance coverage is denied? Employers and insurers are not going to tell you that they looked at your genetic tests and broke this new law. There is just no way to know if insurers or employers illegally use the genetic records that GINA allows them to have.

Employers and insurers should not have access to genetic tests. It is not safe to get a genetic test unless you use an alias, because many genetic testing labs actually sell your DNA and test data.

Americans should demand legislation from Congress that guarantees ironclad privacy protections for all personal health information. The “TRUST” Act, H.R. 5442, restores Americans’ rights to control access to all personal health information. Representatives Markey, Emanuel, Capps, Doggett, Waxman, and Green have all signed on to support the “TRUST” Act.

Status: Became Public Law 110-233 on 5/21/2008.

Sponsor: Rep. Markey (D-MA) with 13 Co-Sponsors

The TRUST Act was introduced to the House on February 14th, 2008. This bill puts patients back in control of their health data and incorporates the privacy protections and principles endorsed by the bi-partisan Coalition for Patient Privacy. You can view the full TRUST Act, or view a section by section summary of the bill.

While the TRUST Act promotes and protects patient privacy, at the same time, it ensures that health information can be quickly accessed with a warrant for national security purposes and that public health authorities will be able to inspect a patient’s health records in true medical emergencies. This legislation strikes a necessary balance between the needs of the medical community and the need of the individual to exercise control over his or her personal health information.

The bill has been referred to multiple committees. Please contact your Senators to ensure the Trust Act, H.R. 5442, passes, putting you, the patients, back in control of your personal health information.

Status: Referred to the Subcommittee on Health, Employment, Labor, and Pensions 4/17/2008.

Sponsors: Kennedy (D-MA) with 15 Co-Sponsors

The stated intent of the Wired Act is to enhance the adoption of a nationwide interoperable HIT system and to improve the quality and reduce the costs of healthcare in the United States. Yet, the Senate Wired Act has no privacy protections or language ensuring patient control of health records. It must not pass unless patients have the right to keep their health records private. Patient Privacy Rights’ provided numerous amendments to this bill. You can download a detailed analysis of the bill here.

Senators pushed the Wired Act through committee in July ’07 without a hearing or any discussion. Last summer the sponsors attempted to ram the bill through the full Senate before adjourning for summer break. The Wired Act was stalled, due in large part to the onslaught of letters you sent to your Senators. Just before the winter break the Wired Act was stopped again.

Updated 8/4/08 The Wired Act was stopped in the Senate on Friday, 8/1/08, when Senators Coburn (R-OK) and Snowe (R-ME) objected to consideration of the bill without debate; this effectively stops it from moving unless floor time is agreed and allotted. While we have a reprieve during the summer recess, we’re still not out of the woods yet. When the Senate reconvenes in early September, the bill sponsors will continue to push the bill. Please contact your Senators today and tell them the Wired Act does not protect our private health records. Please also take time to thank Senators Coburn and Snowe for taking a principled stand against this bad bill. Your input is critical!

Read the Coalition for Patient Privacy’s letter in opposition to the Wired Act (5/19/2008).

Status: Sen. Kennedy from Committee on Health, Education, Labor, and Pensions filed a written report 10/1/2007.

Sponsors: Eschoo (D-CA) with 9 Co-Sponsors

This is the companion bill to the Wired for Health Care Quality Act. Patient Privacy Rights is actively working with the House to ensure ironclad privacy protections are included in this bill.

Status: Referred to the House Committee on Energy & Commerce 10/10/2007.

Sponsors: Moore (D-KS) and Ryan (R-WI) with 49 Co-Sponsors

Patient Privacy Rights supports the Independent Health Record Trust Act. The bill sets up health record data banks that grant Americans ironclad federal rights to control the information they deposit in these trusts. You can read Patient Privacy Rights’ press release in support of HR 2991 here and you can read more information on health banking here.

Status: Referred to the Subcommittee on Health 7/11/2007.

Sponsors: Leahy (D-VT) and Kennedy (D-MA) with 2 Co-Sponsors

Senators Leahy & Kennedy introduced S. 1814, a bill to make the nation’s electronic health information private and secure. We wholeheartedly agree with Sen. Leahy’s comment: “In America today, if you have a health record, you have a health privacy problem… Without adequate safeguards to protect health privacy, many Americans will simply not seek the medical treatment that they need.” S.1814 was referred to the Senate Health, Education, Labor and Pension Committee.

Status: Read twice and referred to the Committee on Health, Education, Labor, and Pensions 7/18/2007.

  • NCVHS Proposal on Data Stewardship

Bureaucrats and political appointees have too much power over our private health records. The Feds recently submitted a draft proposal for public comment that would promote “secondary uses” our our personal health information without contemporaneous, informed consent.

“Secondary uses” include research, marketing, monitoring, data mining and profiling.

The Feds propose to:

  • allow the sale of your medical data
  • limit your consent rights
  • abolish and prohibit real privacy laws
  • expand access to your data
  • enable tracking of you and your doctors
  • enable data mning, patient profiling and data linking

Click here to read Dr. Peel’s in depth comments. The full NCVHS report is available at this link. We had a 48 hour window to provide public comments and our Heroes sent over 300 letters opposing this proposal. Stay tuned.

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